Navigating through diagnosis

How it feels when your child receives a diagnosis can take you by surprise. It can be a very confusing and overwhelming time.  During this time there is no right or wrong way to act or feel.  Every parent will process the information differently.  Even parents in the same family will have a different processing style.

In the UK, far too frequently parents report that they receive their diagnosis from the paediatrician. They are given some websites to look at for more information.  Then, they are then left to navigate the world of Additional Needs, or Special Education Needs (SEN) themselves.  This post will cover:

  • The grief cycle and how this relates to receiving a diagnosis

  • Things that can help during this period

  • A list of common terms your might hear

Family and their dog running

How it feels when your child receives a diagnosis: navigating through the diagnosis

Receiving a diagnosis can be a very confusing and overwhelming time.  I can assure you there is no right or wrong way to act or feel.  Every parent will process the information differently.  Even parents in the same family will have a different processing style.

In the UK, far too frequently parents report that they receive their diagnosis from the paediatrician. They are given some websites to look at for more information.  Then, they are then left to navigate the world of Additional Needs, or Special Education Needs (SEN) themselves.  This post will cover:

  • The grief cycle and how this relates to receiving a diagnosis

  • Things that can help during this period

  • How it feels when your child receives a diagnosis: a list of common terms your might hear

Grief, loss and receiving a diagnosis for your child

Whilst it is old, the Kubler-Ross stages of grief and loss model can offer some understanding.  At first glance, a model designed to process the grief associated with death might seem out of place.  However, many parents reporting going through these stages in a similar way.  Receiving a diagnosis will mean you question the hopes, dreams and fears that you had for your child when they were born.

In some cases, for example Down’s Syndrome or cerebral palsy, it may be immediately clear that your child will always need some level of extra support.  In others, particularly autism, it can be very hard to know exactly what the future may bring.  Regardless of the diagnosis, your brain will automatically start to run through a series of ‘What ifs?’ and ‘Will theys?’.  This is normal. In many cases, because the answer to those questions is unclear, your brain will continue to run through multiple scenarios.

This is where having some knowledge of the grief and loss cycle can help.  There have been updates to the Kubler Ross model in recent years.  The model is also not linear.  Not everyone will go through all stages.  And, you may go back and forth between stages. The process may also begin again when your child enters a different life stage.  Often, this links to milestones, such as starting or finishing secondary school.  At these times, it may become more obvious that your child is not progressing at the same pace as other children.

The stages of grief and loss

It is reasonably normal to cycle through some or all of these stages.  There is no right or wrong way to process the information.  There is only the right way for you.  Your experience will be different to another parent in exactly the same situation.

mother kissing daughter on the cheek

Jenny’s story – receiving an autism diagnosis

Receiving the diagnosis of autism for me was empowering.  It gave me a reason and also helped me to know what I should be doing to help my daughter.  For my husband, on the other hand, it was devastating.  He would not even say the A word for the first six months and I was finding most of the supports my daughter needed by myself.  He was in denial for a long time and would become angry at times.  Accessing the support groups and talking with other fathers helped him a lot.

How it feels when your child receives a diagnosis: supports that can help navigate diagnosis

  • Informing yourself about the condition from reputable sources can be useful.  As mentioned already, stick with national information sites rather than smaller ones.

  • Getting a team of professionals around you who can support your child.  The team will be very different depending on your child’s needs.  An example of professionals who may be involved is listed below.

  • Creating a support network.  This might be in the form of family, friends or paid carers.  There will be times that you want to vent, times you want to share good news and times you just need a break.  Raising a child is exhausting.  Raising a child with additional needs adds a whole other layer of complexity.

  • Making time for self-care.  This is often really hard to prioritise.  However, self-care is very important. It will give you the capacity to continue supporting your child.

The internet – a word of warning

The internet is a double edged sword.  There is so much information available these days and not all of it is correct.  You will want to sit and search about your child’s diagnosis but please stick to reputable websites from national health sites or national bodies or charities.  Steer clear from sites promising miracle cures or exploring worst case scenarios.  These will not be helpful.

Support groups help some parents

There are many support groups available for various conditions. This includes Facebook groups and specific national bodies.  The UK National Autism Society, for example, has regional groups who organise events and supports.  These can be a great source of information and help for some parents.

The emphasis here is ‘for some parents.’  Some parents find these groups incredibly helpful.  However, other parents do not.  Sometimes, they do not want to be reminded about their child’s needs all of the time.  They find their own support networks are strong enough to provide support.  Or, they might find one or two other parents who they really relate to more helpful than a whole group.

Larger groups are not always supportive or helpful for everyone.  In one example, a parent said that the examples in the group were so different from her child that they made her worry for his future.  She said she always felt depressed after being in the group.  And, after talking it out-a-loud she made the decision to remove herself from the group.

It’s also OK to dip in and out of the groups when you need specific support.  It might be you need suggestions for primary or secondary schools.  Or, you’re looking for a good swimming teacher.  You can use the group knowledge and supports to help at stages when you need it.  But, don’t feel like you need to be engaged all of the time.

There is no right or wrong way to navigate this process.  Each child is different.  Every family is different.  Even the same diagnosis can present very differently from child to child.  You will fall into your on rhythm and it will make more sense over time.

People who may be involved during and after the diagnosis is made

Paediatrician

Paediatricians are doctors who have completed additional medical training to become specialists in supporting children.  The paediatrician is ultimately responsible for making a formal diagnosis, so is often involved quite heavily in the initial stages.  They are also responsible for medication prescription and management.

Speech and Language Therapists (SALT)

Speech therapists are specialists in speech, language and communication.  Their role is much broader than just supporting speech pronunciation difficulties or lisps.  They have expertise in listening, speaking and social communication.

Occupational Therapist (OT)

Occupational therapists (OTs) have expertise in both physical and mental health.  They help people of all ages overcome the effects of disability caused by illness, ageing or accident so that they can be independent with everyday tasks.  In the classroom, they can help with functional skills, like handwriting, using scissors or participating in PE.  At home they support skills like dressing, feeding and toileting.  OTs will also provide equipment like specialist seating, wheelchairs and hand splints.

Physiotherapist (PT)

Physiotherapists support physical development, especially walking and balance.  They will likely be involved if a child has severe hypermobility.

Educational Psychologist (EP)

Educational psychologists are the experts in cognition and learning, with a focus on education.  They can make recommendations for reading and learning supports.  They can diagnose dyslexia and other specific learning disorders.

Clinical Psychologist

Clinical psychologists can also provide recommendations and supports for specific learning disorders.  In addition, they can assess for a broader range of needs than educational psychologists, such as autism and ADHD.  They can also provide counselling and additional family support.

Social Workers (SW)

Social workers provide family support and access to additional care resources.  Typically there are different teams with different specialities.  One team may focus on child protection and another on access to care resources.  Some children may have more than one social worker.

Special Educational Needs Coordinator (SENCO)

Also sometimes called a SENDCO, with the ‘D’ standing for disability and occasionally written as ASNCO standing for Additional Support Needs Coordinator.  This is a specific role within schools designated to helping students with additional needs.  The SENCO will be responsible for maintaining the additional needs register.  They will have completed additional training and have more expertise in supporting children with additional needs.  They typically support staff in school to meet the needs of their students.

Specialist Teaching Services (STS)

In the UK, the specialist teaching service is run by the Local Authority. These teachers have specialised in specific areas of disability and provide guidance and support into mainstream schools.  Typically, there is a teacher for autism, physical disabilities, and sensory impairments like vision and hearing loss. However, the team set up varies in each area.

Portage

If your child is not at school, in the UK there is a service called portage.  The service comes from the Local Authority and is designed to help set up the right supports for your child at home before they start school.  The portage service should also be able to help guide you with decision making for schools.

father and son facing each other, smiling, and putting foreheads together

David’s story – my son has Down’s Syndrome

Our son has Down’s Syndrome.  It was difficult to ignore this as he needed heart surgery in his first months of life and we had a lot of professionals involved.  It was really confusing initially as there were so many acronyms and so many different appointments.  We found our own rhythm once he was home.  Navigating each stage of his life brings different challenges as there are always different procedures, forms and supports available.  It can feel pretty lonely at times but we are lucky to have a very supportive family around us.

Other useful things to be aware of in the UK

  • You may be eligible for carer’s allowance and/or disability living allowance. The rules for these supports vary and you can find more information here.

  • Your child may be placed on the Special Education Needs register at school. This register identifies the children who need additional supports to access education.  Your child should also have a support plan in place which outlines the targets school is working on and the support being provided.

  • Children with a higher level of need will have an Education Health and Care Plan (EHCP). This is a legal document which outlines the exact supports the child needs in order to successfully access education.  The process to receive one varies across each Local Education Authority.  Your school SENCO will be able to provide you with the process in your area.  Each area also has a team called SENDIAS whose role is to support parents through this process.

In summary

How it feels when your child receives a diagnosis is not the same for everyone. Most parents however, report that it is incredibly overwhelming.  You are thrown into a world of acronyms and systems that, until now, you were completely unaware of.  And initially, you may be navigating the process alone.  There is no right or wrong way to feel, only what is right for you at that moment.

Overtime, the systems become less alien.  You’ll also learn what the best support is for your own child. As just like there is no right or wrong way to feel, each child is different and every family will carve out their own journey.

Extra resources – UK

  • Each local authority in the UK has a ‘Local Offer Site’ which outlines local services.  If you search for local offer xxx with xxx being your area, e.g., Buckinghamshire, the relevant site should come up
  • Information on Disability Living Allowance
  • The basics of applying for an EHCP – IPSEA
  • Find your local SENDIAS team
  • Communication resources Chatterpack

Photo credits

Father and son Photo by Nathan Anderson on Unsplash

Where to Next?

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